Monday, December 31, 2018

Fuck off to Disneyland.

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My mum and I would wonder when I would get my...fuck off to Disneyland moment. Your cancer needed to be terminal. But we never really know...
Friday, December 21, 2018

More rain

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Well, it is the rainy season. Unlike the refreshing power of the rain here, VHL comes time and time again. You know it will show up. When? ...
Sunday, December 16, 2018

I love rain

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The simplicity of it. The truth of it. The way it does its job Well done rain. I applaud you. Job well done... Keep it up. Well, stop ...

Postmum Pat

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Two letters arrive at my old, old, old, old, old, old address. They contradict the emails I've had. They send me into the state of th...
Tuesday, December 11, 2018

I have cancer

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And it's one of the good ones. In the last month I've heard of two men who have prostate cancer. Oh, one of the good ones Kidney ...
Friday, December 07, 2018

Phones on a wall

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I remember the phones on the wall. It was a day in March. A month, that until then held no significant to me and will now forever be, the mo...
Thursday, December 06, 2018

It's always

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It will always be there. This doesn't go away and never will. Stoic and able to comfort those who need it. It's fine I get tumour...
Tuesday, November 27, 2018

You grow slowly

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Tonight I'm out at St Andrew's night. An annual event here. I saw people I haven't seen in a while. 'how are you?' V...
Tuesday, November 13, 2018

I don't want to

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I don't want to I don't what to chase I don't want to ask I don't want to know I don't want to stop I don't wan...
Saturday, November 10, 2018

I'm nothing special

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Some days I just can't believe what I'm juggling in my head. And there are people here who see and know that. But not my husband. ...
Thursday, October 25, 2018

How far can you go?

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The surgeon has a knife. How far should it go? How often can you be cut and how many times will it hurt?
Tuesday, October 23, 2018

3 years hence

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Facebook tells you about memories. I'm struck by where I was three years ago. I'm in Zomba today and I climbed and walked and saw th...
Saturday, October 20, 2018

Party tears

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I do this, this is a thing I do. I cry at parties. I, of course, do it discreetly. I cry because the timing is good. Drunk friends, drun...
Thursday, September 20, 2018

Epiphany

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Lots of people around here like climbing mountains. I don't. I'm told you get a great sense of achievement once you get to the top...
Wednesday, September 05, 2018

The news we're always waiting for.

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This is a familiar feeling. I don't think it is ever different. The waiting and finding out.    The news is: Brain and spine stable. ...
Thursday, August 23, 2018

Life is a long game, if you're (un) lucky

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One whole year. It reminded me that I'm in charge of this. This life. This journey. I'm in a state of neutrality right now. I...
Saturday, August 18, 2018

The gaps

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I had an interesting WhatsApp chat with my dad yesterday. I asked him the biggest gap between surgeries. 13 - 30 Not bad. I think those ...
Wednesday, August 15, 2018

My 40th year

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For those of us with VHL each year we make it to a birthday is a victory. We describe ourselves as warriors and so these victories each year...
Thursday, August 09, 2018

Waiting

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Grrr, I'm told the meeting is at the end of August. I'm not feeling very patient
Sunday, July 29, 2018

Self preservation

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Wow, we're not quite back in Blantyre but we're in Malawi. The journey has been rather epic so far, but nothing you can't handle...